Remembering young people who have died from sudden cardiac death
On a quiet morning in May 2018, 22-year-old Aidan passed away suddenly at home while preparing to leave for university. He was not engaged in any strenuous activity, yet his heart stopped beating and his death came completely without warning. Despite extensive investigation, the cause remains unknown.
Genetic analysis later revealed that Aidan had Vascular Ehlers-Danlos Syndrome (vEDS), a rare inherited connective tissue disorder. While vEDS is known for its life-limiting complications, it has not been clearly linked to sudden cardiac arrhythmias. Aidan’s case demonstrates a rare intersection of two uncommon phenomena. It demonstrates why medical research, such as that undertaken at the Centenary Institute, is crucial for understanding unusual conditions and developing better treatments.
Aidan was a gentle, thoughtful young man with a deep love for literature, politics, and poetry. He had completed a degree in politics, economics, and international relations and was excelling in his law studies. He was due to receive the Dean’s Award for academic achievement shortly before his death.
“Aidan was incredibly humble, he’d hold all of his achievements quietly within himself”, said his mum, Jenny. “He had a tremendous sense of security in his own future: we were so proud of having raised a young man who saw the possibilities life could bring. The future looked good. But things didn’t turn out that way.”
His family remembers him for his warmth, humility and appreciation of life’s simple pleasures—family meals, holidays in nature and the imaginative worlds of his favourite books and TV shows. In his memory, they established the Walk for Life initiative — an annual walk around Sydney’s Centennial Park — to support families affected by sudden cardiac death and to honour the lives of young people lost too soon. The 2025 event will be held on Sunday 30 November at 10am.
Aidan’s story underscores the importance of genetic research and the need for deeper understanding of rare conditions like vEDS.
Approximately 8% of Australians live with a rare disease, that is around 2 million people, and globally about 350 million people are affected. Rare diseases are varied and often life-threatening, yet most still remain undiagnosed and have no effective treatments.
At Centenary, we are working to change that. Our Centre for Rare Diseases and Gene Therapy, led by Dr Charles (Chuck) Bailey, is researching rare diseases to improve diagnosis and treatments. Dr Bailey and team have recently made a landmark discovery that could lead to safer and more effective gene therapies for a range of serious genetic disorders including muscular dystrophy and haemophilia.